Following on from my thread asking for links between Autism and Epilepsy, my DD (16) has continued to have major seizures, despite meds going up and up
Brief background - initial EEG and sleep deprived EEG both showed features of focal and generalised epilepsy, which apparently is causing some concern. So now she has to have a 24 hour EEG, which we just got the letter about today - it is scheduled for next week.
DD (ASD) is about to start her GCSES, but luckily the first one is not until the end of the week, this is scheduled for the beginning. She is not going to want to miss school - she has missed so much lately due to being in and out of hospital and she doesn't cope well at all with the stress of not being in to do her work. DD2 (6) also has gymnastics on the evening during the EEG period which she wont want to miss either - upcoming display practice etc.
Does anyone please have any tips on how to manage this please? School wont be much of an issue really, I have to take her and pick her up anyway (seizures are that frequent she cant be left alone), and I know they will let her stay in the support base all day. It is more coping while out and about - at gymnastics I guess. I don't know whether I should ask the boss to say something to the coaches in readiness for awkward questions (both from coaches and the kids), or whether to simply ride it out - but DD would hate it if she felt people were staring at her - and would get very anxious if someone actually asked her about it.
This is all so much of a shock, these past few months have been so hard that I'm not really thinking straight, and would appreciate a few pointers from others who have maybe been here before?
I'm afraid that I think your DD's EEG and (lack of) stress levels are VASTLY more important than a 6 year old's gymnastics class. (I hope I'm reading your post correctly that you'd have to take DD1 with you).
If you can ask someone else to take DD2 on this occasion then great but otherwise I think you need to prioritise DD1 and explain to DD2 that she has to miss gymnastics that week.
The doctors are obviously very concerned and they have to get those seizures under control. I think this has to come above everything else for the time being.
Thanks bluebird - and obviously you're right. At the time of posting I was feeling completely overwhelmed, and as a single parent it always falls to me to sort everything out and I guess I was maybe trying to let DD2 continue as normal.
We were at gym tonight, I ended up in tears and a long stor short, a dear friend has agreed that DD can go to her house with her during gym (SEN teacher and fully first aid trained). I've said it obviously depends on DD as she may not even want to leave the house while wearing it - which is totally fine, we can do that instead. I think I have calmed down a bit now - must be the honks!